Medical updates from Mattie’s mom…

Posted on: July 11th, 2015 by jeni No Comments

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June 2017
Update from Mattie’s mom

It’s hard to believe that a year has passed since the big “Celebrate 83″ Bucket List Party was enjoyed by so many folks who gathered with me to “just show up — with purpose, and offer a toast to life with gratitude!
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As we begin another “birthday season” — for Mattie and for me, I am excited that I am continuing to defy predicted expiration dates and anticipated shelf life limitations. I am here — with purpose, and gratitude!
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Yes, I live with neuromuscular disease, radiation fibrosis, kidney damage, cardiac complications, sensory impairment, and other incurable progressive conditions and complications.
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Yes, I rely on a ventilator and oxygen, a wheelchair and many ADL adaptions, daily IV fluids and electrolytes, hearing aides and glasses, and other purpose enhancing and life sustaining supports.
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Yes, my calendar in the past couple of years has been filled with frequent and prolonged in-patient and out-patient hospital stays, with chemotherapy and radiation, with multiple surgeries to remove cancer and intestinal blockages and to implant a cardiac pacemaker and medical infusion devices, as well as a hundred “deep sea dives” during months of hyperbaric oxygen therapy.
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And no, I am not “healed in body” — and honestly, I am not likely ever to claim that phrase as a descriptor for my medical status.
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I will continue to deal with the challenges of dysautonomic mitochondrial myopathy and cardiac issues like aortic valve insufficiency, and I will continue to negotiate treatment plans and options that are needed to compensate for the complications of cancer treatment and other health challenges. My days are likely to always include medical tasks and interventions that sometimes take time, or patience, or are uncomfortable, but are necessary.
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Yet, I am not only surviving — I am also thriving. Despite a body with an apparent near-Guiness record litany of concurrent life-threatening and debilitating conditions, my mind and spirit are strong, and growing in strength and understanding and purpose.
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And remarkably, with a lot of support, my body is doing about as well as it can possibly do considering all the complications — which makes it possible for me to say – “I am okay, and content, with who and how I am…” – which Mattie believed is an essential truth for peace.
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I work and I play, I plan and I pray, and I live and I love. Despite statistical odds stacked against me, I am existing, and doing so with purpose — inner purpose, and shared purpose, and eternal purpose. And this truth brings me happiness and joy, and hope and peace.
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I cannot predict or control all the ups-and-downs that will unfold in each day, or that will slowly or suddenly force me to find (yet another and another and another) “new normal” for how I move through each day — in body, mind, or spirit.
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But I can predict and choose how I will move through the blessings and burdens of each day. All the challenges inevitably shape who and how I am, but they do not define me as a person. Instead of hardening me, they strengthen me, in my commitment to purpose — for myself, for others, and for God.
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This time last year, I gathered with friends to count blessings and share a toast that “hope is real” and “life is worthy.” Today, I continue to try and check off remaining items on my Bucket List — most involving travel and writing and celebrations of life. And in a few weeks, I will be celebrating the life and legacy of my son, Mattie, with a “Peace Day Party” co-hosted by leaders and businesses from our local neighborhood and city.
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I encourage folks to join me in celebrating — in person, or in spirit — as we “Make Peace the News!” on July 16 during the Peace Day Party — an indoor/outdoor community event (click here for information…).
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I encourage folks to support Mattie’s legacy and peace mission (and mine as well) by participating in our annual Birthday Campaign (click here to share your gift…).
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And most of all, I encourage folks to continue believing the “peace is possible” — and to choose peace in attitude and action, within and with others, and for our world.
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April 2017
Update from Mattie’s mom

2017 0409 Medical (& Giraffe) Update –
This update can be found on Mattie’s Facebook page here…
… just scroll down to the April 9, 2017 entry…  

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March 2017
Update from Mattie’s mom

2017 0301 Medical Update –
This update can be found on Mattie’s Facebook page here…
… just scroll down to the March 1, 2017 entry…  

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October 2016
Update from Mattie’s mom…

Happy Halloween

When an oncology office appointment happens on Halloween Day, we arrive in style — Jeni Stepanek as the Energizer Bunny and “Team Jeni” driver Carol Anderson as a Chiquita Banana. #CelebrateLife!


Thank you all for continued prayers.

Many folks have asked for “an  update.”
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Basically, things “are as they are” 
– which is actually a good thing!
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I have been told that there is no cure
for the progressive gut fibrosis that was a
rare side effect of the radiation treatment.
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And that, combined wth the chemo,
has (not surprisingly) resulted in a
progression of challenges related to
the underlying neuromuscular disease.
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So, the phrase
“this is as good as it will get” 
is the current thinking,
and the current prayers are that the
“progression” aspect of the condition
takes its time, and happens slowly.
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it seems that the hyperbaric oxygen treament
did actually slow the progression some,
though it did not reverse or fix the condition.

So “the daily news” is that each month,
I have some “pretty good days,”
and I have some “not so good days,” and
I have a few “really, really, really not-good days.”
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But “the good news” is — each month, I have “days.”
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Halloween 2016 — “The Energizer Bunny” seemed like the perfect costume for Mattie’s mom, Jeni Stepanek… she “keeps going and going and going…” — #CelebrateLife!

Sixteen months ago, the odds were really
stacked against me trying to fight cancer,
or getting through major surgery (twice),
or going through chemotherapy and radiation.
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But like the Energizer Bunny,
I “keep going, and going, and going!”
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I continue to face many medical challenges,
though right now, I am in a “respite phase”–
not getting better, but not getting worse,
and learning to “live around the challenges.”
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Each day is filled with much medical support,
and each next day holds many unknowns
that are grayed by ongoing odds against me.
Still, despite everything, I would say that
I am not only surviving, but I am also thriving.
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Surviving and thriving are not about
medical prognoses or life span odds,
but a statement about
my ability, and my choice, and my purpose,
to celebrate life, every day, in some way,
and to do so with gratitude.
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I cannot predict or control any next moment,
but I can embrace every now moment,
and work and play, and love and laugh,
and hope and pray, and simply BE –
celebrating “as good as it will get.”

“Forthward” –
Jeni Stepanek (“Mattie’s mom” / “Mama Peace”)

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June 2016
Medical updates from Mattie’s mom…

“Celebrate 83″

Checking off Bucket List items — from visiting Strawberry Fields in Central Park, to being an SNL audience member, to writing another book, some travel, and more, including “celebrate 83.” Hosted by We Are Family Foundation representateves Mark & Rose Barondess with Nile Rodgers and Nancy Hunt, this was a very nifty gathering of family and friends from across all chapters of Jeni’s journey, with the purpose of toasting life — with gratitude. (Click images to enlarge)

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News & Stories:

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Facebook Update on Celebrate 83 party here… (scroll down to June 2016) 

Annapolis Gazette – Oprah Visits Birthday Party story here…

NBC4 (DC) – Celebrating Life story here…

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NBC4 (DC) – Choosing Peace story here… 

More celebration photos on
Jeni’s FB page here… &
Mattie’s FB page here…

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Super Soul Sunday Short:
Oprah talks with Jeni Stepanek
about hope and peace,
and celebrating life (and 83)!
(click here…) 

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May 2016
Medical update from Mattie’s mom…

Click here to read an update
from Mattie’s mom…
(scroll down FB page to May 2016).

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April 2016

Medical update and prayer request from Mattie’s mom…

 

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Mattie’s mom has shared an update from her medical journey,
and a request for prayers.

Thank you to all who have already been
praying and sending positive thoughts,

and to all those who have continued
to support Mattie’s Foundation

during this very difficult year.
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CLICK HERE to read the update…
(scroll down FB page to April 2016)
 

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CLICK HERE to read updates from 
 Winter 2015 into Spring 2016
(scroll down FB page to
January through March 2016 entries)

 

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December 2015
Medical update from Mattie’s Mom…

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Hello friends –
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As prayer circles begin storming the Heavens for me again, word is out there that I am back in the hospital, and I have begun receiving email and message inquiries.
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I will post “update notes” on Mattie’s Facebook page (here…) as I did during chemo and radiation, but a quick response here. Yes, I was re-admitted to the hospital — with more complications related to the various treatments for cancer.
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Surgery will inevitably be necessary to address the issue, but we are hoping to delay that until at least February. It is very risky to do surgery on an area that has recently received radiation therapy, hence the need to delay the procedure.
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I am doing well, and in much less pain than in previous weeks as they have been draining excess abdominal fluids. All prayers and positive thoughts are appreciated. Thank you.
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Also, I ask that you continue to embrace peace as your choice, and to support Mattie’s Foundation. Because it has been a rough year for me medically, it has been a challenging year for fundraising to support our peace mission. Thank you to all who have given to Mattie’s Birthday Campaign or become one of our Peace Champions. Your gifts support our activities and programs that help children and adults understand more about what it means to seek and make and bring peace — for one’s self and for our world.
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Remember — most of our activities and programs are offered at no cost to participants.  So, as the year comes to a close, please consider letting us be your End of Year Giving Tax Deduction. Whether you give $5 or $50 or $500 or  5 gazillion dollars — your gift is 100 percent tax deductible, and you are supporting a worthy mission of hope and peace for our world. And I am deeply grateful.
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Click here to make your gift to
support Mattie’s peace mission… 
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Peace, 
Jeni (“Mattie’s mom” / “Mama Peace”).
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PS — Click here to enjoy Mattie’s “December Prayer” poem
——–in video and in print and in many different languages! 
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Read our December e-Peace Update here… 

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Thanksgiving Day 2015
“On Giving and Thanks”
A video expression of gratitude
created by Jeni Stepanek (“Mattie’s mom”)

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“On Giving and Thanks”
Countdown to Thanksgiving video here:
https://youtu.be/ftyH4W2S6bc

To accompany the
“Final Countdown to Thanksgiving – End of Week Note”
(Notes located here:
https://www.facebook.com/MattieStepanek/) 

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Created by Jeni Stepanek (“Mattie’s mom” / “Mama Peace”) -
a video expression of gratitude for all those who were on the
“Countdown to Thanksgiving” journey
as she moved through treatment for cancer.
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The video is a mix of information and inspiration,
and a touch of that silly humor that keeps the
“Step’obbi’comb’ake’r'oss Fam” moving forthward,
even when facing intense challenges,
and a celebration of all those who
chose to be a a part of the
“Countdown to Thanksgiving” journey.

Video link here: https://youtu.be/ftyH4W2S6bc 

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August through November 2015
“End of Week Notes” from Mattie’s mom
posted on Mattie’s Facebook page…

Click here to read the posts…
(scroll down FB page to
August through November 2015 entries)

 

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August 2015
Medical update from Mattie’s Mom…

Jeni Stepanek (“Mattie’s mom” & “Mama Peace”) with her newest little grandkin – Ivey McLean Baker. Ivey was born on August 3, 2015 to Jamie-D and Tommy Baker. Jamie-D likes to say she is “Chapter 3″ in the Messenger book (Mattie’s memoir). She is also an amazing member of the Board of Directors for Mattie’s Foundation. Ivey has already joined her brothers, Collin and Chase, as members of Mattie’s Peace Club Kids!

Hello friends, 
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This is Jeni, Mattie’s mom. I had surgery on July 20 to remove aggressive and invasive reproductive system cancer. After some time in the ICU, I have been recovering well at home from this procedure, and I am deeply grateful for your support, prayers, and inspirational messages.
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I believe that I am doing well in part because of my great medical team, and in part because of the positive energy being sent from folks all around the world. And, I know that God is with me through each step of this challenging journey – which is an amazing source of strength.
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In the next couple of weeks, I will begin treatment to continue the battle to beat this cancer. Treatment will most like include daily radiation with concurrent weekly chemotherapy treatments – which will last six to ten weeks or so. Basically, it will be quite a rough fall for me medically and physically. However, I am moving through this with faith and gratitude for each day, and with optimism and energy that I choose from within and that is supported by so many good people.
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While the fall will be quite challenging, I am already looking forward to celebrating Thanksgiving with a new level of energy and gratitude. My “giving of thanks” will be quite a long list this year, and it will include the supporting folks in Mattie’s Peace Network. It will also include members of Mattie’s Foundation Board of Directors, and some of our key peace volunteers (like Kate Esaia of NJ, Ashely Ardito of RI, and the Jones Family of PA – all of whom have stepped up and taken over some of my many day-to-day logistics of running Mattie’s Foundation. This gift of support allows me to tend to medical needs without any interruption to our Foundation mission and peace activities.
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I want everyone in Mattie’s Peace Network to know that despite some minor changes, our free annual outreach activities will continue this fall and winter — including our For Our World Campaign and our Mattie’s Peace Tree 2015 activity. My hope is that global neighbors choose to participate in these quick, free, fun activities that increase awareness of Mattie’s peace message, and that can lead to changes in attitudes and habits that move peace for “possibility to reality” at personal and community levels. Information about these activities can be found below.
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With peace and gratitude,
Jeni (“Mattie’s mom” & “Mama Peace”).
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CLICK HERE to read our August e-Peace Update
which includes a thank you & current Birthday Champions list,
an update on Mattie’s mom & her medical journey, and
information about free Foundation activities for this fall…
THANK YOU! 

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July 2015
Difficult News from Mattie’s Mom…

Hello friends -
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I have some difficult news to share. I am facing yet another challenge – and I am asking for your prayers. This past week I learned that I have an aggressive uterine cancer. It is unclear at this time if this location is primary or secondary, only that it is quite serious. I am just beginning to meet with specialists to discuss options.
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This information is being shared for three reasons:
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1 — so that folks have accurate information rather than grapevine tidbits. I know that as information begins to spread, there may be misinformation mixed in. Accurate information will be shared when available on Mattie’s FB page most frequently, and via this e-Peace Update when relevant.
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2 — to encourage you to continue to support Mattie’s Foundation. We are now in the “peak week” of Mattie’s 25th birthday campaign — with his actual birthday being this Friday (July 17). It is very difficult for me to know that I will not be fully available to do the final push for this crucial, annual fundraiser.
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3 — to apologize in advance for any delays in you receiving a tax statement or response to any emails or donations during the coming weeks.
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I promise that anyone who supports Mattie’s Foundation and our 25th birthday campaign WILL be recognized and celebrated, and you will receive a tax letter. But as I begin a challenging journey on Monday morning, there will inevitably be delays.

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Your support will keep Mattie’s Foundation running,
and his peace mission and legacy growing. 
I am grateful.  
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Regarding my health, I will share relevant updates when available. And please — I truly welcome all prayers and positive energy, from all people of all denominations. I will read every email message and FB message that comes through, though I will not be able to respond in a timely way.
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Please know that I am continuing to celebrate life, and seek peace, and I hope that you are doing the same.
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With appreciation,
Jeni (“Mattie’s mom” & “Mama Peace”).
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Please click here to support
Mattie’s 25th Birthday Campaign —

Gifts of $25 (or more)
for Mattie’s 25th birthday.

During the next few weeks
as I move through this journey,
I encourage you to take time
to really explore Mattie’s website…
About Mattie, About the Foundation,
About our free Activities and more.
Please, stay involved. 
Peace matters, and so do you.
Peace is possible… choose peace! 

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November Spotlight

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- Mattie J.T. Stepanek